Long QT Syndrome: Rare Connection

[eyennyGlimmer]

Emma,
You have Long QT too? OMG it is a rare disease so it is strange to know someone else that has this besides my family ..I think it does have something to do with my heart or the strep throat I had or both..lol..Im just worried I have Isaac's syndrome as you will see from my other post I just put up today....I belong to the SADS foundation for Long QT and my family did a study with them before on the heart thing I am wondering if I can talk to them about this, I am going to try that. I will let you know..oh, do you have a heart defib implant or on meds?

God Bless,
Jenn

 

[sarahandlifethelifem]

hi jenn
yes i, and 2 of my children, are on medication - and so far that has been sufficient...

i'm actually off to see the cardiologist today - the first time since i've started twitching and shuddering - so i'm hoping he may have some ideas... i really though the potassium theory might be worth tuppence, but my gp looked rather blank about it

will let you know...
emma

 

[SaintJimmy]

hello all,

I have sometimes this bad sensation too.
I have it when i start sleep... it's look like to big truck vibration who pass in my bedroom...
When i am very tire or when i take meds for sleeping, i don't this bad sensation....I sleep same a baby
It's true, this bad sensation is rarely, but afraid !!

friendly

Stéphane